Scars

My scars or hurtys as my children call them. I have meny on my body and I now have two more. One for the pacemaker and one for the removal of the Reveal device.

These scars are just part of me now. At the moment they are reddy pink colour and they will fade in time. Well that is until I have to have a new pacemaker put in in about 10 years time. Then its more scars but this is the life I have chosen and it is much better than collapsing all the time.

Then there are the other type of scars. Then mental ones, we all have then. I'm lucky I have only a few of them but the biggest one and one that I'll never really get over is the death of my father. I still miss him and I think I always will. But I know we will be together again one day.

He had a massive heart attach that he did not recover from in 2006. At the time I was living with my then boyfriend, now husband, in a rented flat. We had a call very late at night from my sister to say that the pararmedics were at home, I still call my mum's house home and I think I always will, and working on dad as he had had a heart attach.

After the phone call there was a rush to the hospital. Only thing was we didn't have much petrol in the car and had to call a friend to meet us at the petrol station.

Just as we got there I recieved a phone call that was to change my life. MY DADDY HAD DIED. It was like my heart had just been taken from me. Then the tears came, and are staring now as I write this, they did not stop.

When my friend meet us he came and sat with me while my hubby filled the car. He have me the biggest hug and I told him that my dad had died. He knew what I was going through as he had also lost his dad at a young age, my dad was only 53.

We finally got to the hospital and were taken into a room where my fathers body had been taken. With my mum, two brothers and my two sisters. I said my good bye through a vail of tears. Mum took off his wedding ring and we left.

Somehow we got back to my mum and sat in silance until it was light.

There were meny tears shead and I still well up every now and then. This time of year is just one of those times when I like to remember him.

I'm not certain why I have writen this blog I think I just needed to write it all down and get one of my stories out there.

My Osteopath

I first went to see her to get some help with my migraines, which I have had since I was 11 years old. This was before I had my first child, after which I had started to collapse. She started by taking a history of my medical conditions and then did some work on my neck and upper back.

I came away feeling so much better but it was well over a year before I went again. This was because I had had a very unhelpful appointment at my local hospital about my vasovagal syncope, at which the doctor had told me the condition wasn't life threatening and I would simply have to live with it! I was so upset.

My husband suggested I should called my Osteopath, which I did and got an appointment. She was very intrrested in my condition and we had a long chat about what had been happening.

She treated me again and I went a full 16 days before I collapsed again. It was the longest I had gone, so I started seeing her every two weeks. I was still collapsing but it would be about 10 days after treatment that I would start collapsing again.

However, it soon got too expensive to see her twice a month, so we went to monthly appointments.

I found that just having that half hour every month was very relaxing and helped me a lot. Not only was I collapsing less often, it was also nice to open up to someone who was not close to the situation.

I loved having that half hour of peace and calm after a stressfull month of collapsing and not going out unless the children or I had a doctor's appointment. I don't drive (and wouldn't have been allowed to anyway because of my condition) so if I did ever go out I had to walk.

We used to live in a top floor flat at the top of a very steep hill, and going out was always a worry in case I collapsed. The route down the hill into town was along a busy round and if I did collapse there, the children's buggy would have continued down the hill and straight into any traffic that was coming along. So for most of the time I just stayed inside all day in our tiny flat.

Sometimes I wonder if I did the right thing but I couldn't risk my children's safety if I collapsed on a road.

Going to see my Osteopath helped the stress of it all. The 'pummelling' as I call it, was good also and so was the chat.

I still see my Osteopath evey month even though I have not collapsed since having my pacemaker implanted.

2 Nights in Hospital

So the day arrived and I was off to the hospital for my pacemaker implantation.

After a very sleepless night I got up, repacked my hospital bag just to check that I had not forgotten anything, got the children up and made sure all their stuff was also packed, as they were going to stay with their nanny (my mum) for the time I was in hospital. We thought that this was best as my husband could then accompany me while I was admitted.

With the children and us fed, we checked one last time to make sure we had everything, and then we were off. First stop; my mums house.

Once we had dropped the children off it was a walk to the tube station, then two underground lines to South Kensington.

My admission time at the Royal Brompton Hospital was 2pm. We arrived half an hour early and I was shown to a waiting room as my bed was not yet ready. An hour later my bed was finally ready for me and I was allowed to choose from six beds. I decided that the one near the window on the left side of the room would suit me fine.

Once I was settled, a very lovely nurse who was about my age came to do the paperwork and give me my identitiy wrist bands. I also had two lovely red ones as I am alergic to NSAID's, which translated is non-steroidal anti-inflamatory drugs.

I then had a cannula put in my elbow joint, as a ward doctor could not find a suitable vein in my hand (they are there though). Through this I had my blood taken. I was then put on an ECG monitor to see what was happening to my heart. It recorded that I had bradycardia (slow heartbeat).

After this I was wired up to a little box that transmitted to the nurses station what my heart was doing, so they could keep an eye on me and would know in advance if I was about to collapse.

The veiw from the window was not the best. All I could see was the tops of the other hospital buildings but at least it was a veiw.

Having been in the hospital before, I knew the food was suposed to be good and now I was going to try it. All I can say is that the food was the best hospital food I have ever had.

Then it was time for my husband to leave but before he did, one of the doctors came round to say that I should be going down for my operation at 2pm the next day.

I always hate it when my husband has to leave. It was only 8pm and I was all by myself, although there were other people there. In the bed opposite me was a lady about my age who had had a pacemaker since she was a child. Then there were two spare beds, one either side of the room, then on the same side as me was a lady whose heart was beating too fast and opposite her was an older lady waiting for a heart by-pass.

We all had a chat then I got out my sister's eee-pad that she had kindly lent me for this hospital trip. I was watching Japanese anime series AKB0048, which my brother has got me into but after a few episodes I got a bit tired and got ready to go to sleep.

It was another restless night, can anyone ever sleep in hospital? I was woken up at 6am by the nurse who came to check my blood pressure and give me my meds. Over night they had been quite worried about me as my heart rate had fallen to 40 beats per minute. This is something I would never have known if I didn't have this little box with wires attached to me.

So the day had come. I was given a hospital gown to wear and some special soap to wash with. Everyone except me and the lady two beds down had breakfast, we were nil by mouth.

Then the nurse came in and said that I might be going down in the morning instead, so I had to get ready... NOW. Off to the shower the nurse and I went (I was not allowed to wash alone as they were still worried about my heart rate) and I washed, then changed into the hospital gown - you know the type. Bum hanging out the back...

Having washed and changed, I had to go back to my bed and wait. I waited and waited, and then waited some more. Morning turned into afternoon and lunch had come and gone. Finally a porter came to get me at 2pm (the original time!).

I was taken down to the cath lab and left outside, happily sitting on my bed. A multitude of doctors then came out to talk to me and one gave me some very strong antibiotics via the cannula in my arm.
I was then asked to walk into the cath lab, where there was a bed with lots of computer screens at the side of it and a very big metal arm thingy with the x ray machine in it.

I got onto the bed and had my arms put in some scoops that were placed beside the bed. The pacing doctor then put even more stickers on me so they could monitor my heart throughout the procedure.

Finally, my consultant showed up and we had a little chat while the scrub nurse put iodine on my upper chest and over my shoulder. I was then given some sedation and had an oxygen mask put on my face.

When the local (yes, local!) anaesthetic was injected into me it stung at first but then my shoulder went numb. I must state at this point that local anaesthetic does not last for long in my body.

I could feel that my consultant was pressing on my chest and putting the wires in place. Once it was all in, the pacing doctor tested the device to make sure it was working. Then it was time to close me up. I could feel the stitches being put in, so I told my constultant. He said that he only had a few more to do and it would hurt more to have extra local put in than him finishing stitching me up. So I gritted my teeth and shed a solitary tear!

After I had been stitched up, he put some glue over the wound so I did not need a dressing. Then it was time for more local anaesthetic to have my Reveal© device taken out.

If I thought the last few stitches had hurt, this REALLY hurt as the local had to go directly into the scar. Thankfully this part of the operation was very quick.

Then it was all done and another test for the pacemaker. All was well so back to the ward for me.

It was about 4.30pm when I got back, so the op must have taken about two hours.

Once back on the ward I was in a bit of pain as the local had worn off, even though it's supposed to last four hours. My lovely nurse gave me some codine and paracetamol which took the edge off the pain.

I was so looking forward to my dinner, as I had been nil by mouth since the night before, and when it finally came it was SO nice. I always find that your first meal after not being able to eat for a while tastes the best - must be something to do with giving your taste buds a rest.

I had another uncomfortable night and was woken again at 6am for more checks. During the night my heart rate didn't go below 60bpm as that was the lowest rate that my pacemaker (PM) has been set to. If my heart rate falls below 60bpm the pacemaker will kick in and pace me for a minute. I also have what they call rate responce which will kick in very strongly if my heart drops very suddenly.

In the morning the pacing doctor came round to check the PM and everything was working fine. I just had to wait to be sent down for an x-ray to check the leads and then for a chat to the doctor before I could go home. But this took all day and I even got to stay for lunch.

The doctors were taking ages (as usual) and I was finally sent down to x-ray. My husband came to collect me ten minutes after I came back from x-ray but there was even more waiting. Finally at 2.30pm I was discharged.

The weather was horrid. We had only walked down to the end of the road and the heavens opened, monsoon style. We were both soaked to the skin for the trip back to my mum's to pick up my children.

It was so nice to see the little monkeys, I had missed them so much. They didn't know how to hug me and in the end we settled for side hugs. They both wanted to see the 'hurty' as they have named it. I have big hurty, the pacemaker scar, and little hurty which is the Reveal© device scar.

After my mum had fed us and dried our wet cloths, we went home. I did find that the seat belt hurt so I needed to put a towel there to pad it.

My first night home was a sore one but I got through it.

The journey begins

So my first appointment at The Royal Brompton was good, as I finally got to talk to a doctor who understood my condition. He put me back on the Midodrine, as when it didn't work the first time the dose should have been increased rather than stopped.

I went away happy that something was being done and I looked forward to my next appointment.

In the meantime my husband had been keeping a log, on an excel spreadsheet, of all my collapses and I decided that I would also go to an Osteopath to see if she could help me, but more about that in another blog post.

My next appointment was after christmas. I was put on another drug called Ivabradine, which I was to take with the Midodrine. My consultant told me that he wanted me to have a Reveal© device implanted into my chest to monitor what happened to my heart when I collapsed.

Well, I was offered an appointment for the implant and it was on our wedding anniversary. I took the appointment, as I thought it was best to get it over with. But, to cut a long story short (I will blog about it later), it was cancelled on the day after I'd been at the hospital for over 8 hours and hadn't eaten since 9 o'clock the previous evening.

Eventually, after a very angry letter was sent to my consultant, I was given another appointment for April 2012. This time it all went ahead. Mine was the first operation of the day and I was on my way home by 2.30pm the same day.

I was given a remote device so that I could get the implant to record when I collapsed. After a while, the recorded information showed that my heart was actually stopping, so back into hospital I went for a chat with my consultant about having a pacemaker.

We decided to go for a pacemaker and I said that it would need to be implanted before my litle girl started school in September.

You might think that this was a daunting prospect, but I was actually relieved as it meant my children would no longer be scared every time I collapsed.

My appointment came through for the last week in August and I went into hospital for two nights.

I will post more about the actual experience on my next blog.

So I have a Pacemaker!

I have had this pacemaker for 8 weeks now and I can say that I have not collapsed since having it implanted.

The road to get my PM was a long one. After having my daughter by emergency C section at 35 weeks, 4 years go, I started collapsing - not very often at first, 21 days at a time, but they started happening more and more often. In the end it was happening every 3 to 10 days.

So first my GP sent me to a Neurologist who sent me for loads of tests, and he also sent me to see an ENT doctor just in case it was something to do with my inner ear. After a while we found that it wasn't my ears, so I was sent for an MRI. However, before I could have it done I had to have a pregnancy test and it showed I was pregnant with my son, so no MRI for me until I had had him.

While I was pregnant the collapsing stopped. I thought "Thank God it has stopped!" but, oh no, after another emergency C section at 34 weeks, and once the little man was 12 weeks old 'Bang!' off it all starts again.

So back to the hospital and MRI scan which showed a brain, so I do have one in my head, and it was normal.

The collapsing was still happening but as it was not neurological I was discharged, but with a menton that it could be my heart and I should go see a cardiologist.

Off to the cardiologist I went and he suggested I might have Vasovagal Syncope. So he sent me off for a tilt table test in London to confirm.

The very lovely syncope nurses did the test and bingo! - Vasovagal Syncope. They said to try Midodrine. Back to my local hospital and I was put on Midodrine and told to come back in one month.

One month down the line and the Midodrine had not worked. My normal local hospital cardiologist was on holiday so I saw a locam doctor who told me to come off the drug and to 'just live with it!'

I had gone to the appointment with both my very young children and left very upset and had a long tearful telephone conversation with my mum, then husband.

I wrote to my consultant a very long and upset letter saying that the collapsing was getting worse and I had already collapsed with my son in my arms. Also my little girl was being my carer and she would sit with me stroking my hair while I woke up.
By this time I had already broken an arm.

Once the doctor had received my letter via email he arranged an appointment to see him and said that, as I have a very specialised condition, he was sending me to the best team in London who had just moved to The Royal Brompton hospital.

So I had to wait for another appointment, which came in October 2011.

That's when my journey really began.

About Me

So this is my first blog so I thought I would say a little bit about myself. I'm a mum of two who has Vasovagal Syncope and a pacemaker which was implanted on the 24th August 2012.

I had the pacemaker because the doctors found out that my heart was stopping for a few seconds which was making me collapse every 3 to 10 days.

So a new friend has suggested I write a blog about what has happened and how it has effected me and my family.

So here we go...